Don’t meet an open door with a closed mind

“Listen to women. Trust us when we say we’re sick.”

Long-time Feministing readers might have noticed that my byline hasn’t been on the site as much in the last couple years. That’s because I’ve been at work writing my first book, Doing Harm, about how sexism in medicine is harming women, which is out today.

As I write in the 2,000-word version of the book on HuffPost today, the roots of this book started with my own experience getting diagnosed with the autoimmune disease rheumatoid arthritis several years ago. But it was hearing other women’s stories that began to convince me there was a dire need for this book. While I got diagnosed fairly quickly and easily, I learned that many other autoimmune patients, 75 percent of whom are women, go undiagnosed for years, and they often find their symptoms dismissed by doctors during this search.

When I started asking women I knew if they’d had similar experiences—of their symptoms being brushed off, or normalized, or judged to be “all in their heads”—it seemed like nearly every one who’d had a serious health problem had an experience like that to share. There was the friend whose abdominal pain and incontinence of a ureaplasma infection was diagnosed as “stress.” The friend experiencing dizziness, wooziness, ringing in her ears, and floaters in her eyes from West Nile virus who was referred to a therapist for depression. The friend who was told her stabbing chest pain from pericarditis, inflammation of the lining of the heart, was likely just anxiety. And on and on.

Ultimately, nearly 200 women wrote to tell me about their experiences of medical sexism, and I interviewed dozens of them. The stories that are included in the book are powerful—all the more so because, for each one, there were a dozen more that just as easily could have been included. Anecdotes, of course, are not data, but as I delved into the research, I found the hard data too—as well as the history that helps explain why stories like these are so common. I hope that the book will help women realize that their experiences feeling dismissed, unheard, and disrespected in the medical system are not the result of their own individual failings or simple bad luck. Instead, they reflect deep, systemic problems within medicine—problems that urgently need to be exposed and fixed.

It is those within medicine who have the ability—and bear the responsibility—to solve these problems. But particular in this #metoo moment, I believe there is enormous power in women sharing their stories. One thing I didn’t fully appreciate at the start of my research is just how much silence surrounds these experiences. It makes sense though: We live in a culture that’s endlessly discussing health—how to get it, how to keep it—but we are not very good at talking about illness. It’s hard for healthy people to know what to say to someone who is seriously sick, so it’s often hard for someone who is sick to talk about it—let alone to explain that you are sick but haven’t been diagnosed: that the doctors don’t have any answers and have begun to imply that you’re just stressed, or exaggerating, or making it up entirely.

And while it’s true that the very paternalistic doctor-patient relationship of the past has changed radically in recent decades, we still, as a culture, grant medicine and its representatives with great authority. We believe in science, and we consider medicine to be an extension of science. In the exam room, the doctor always has the power—no matter how much authority the patient may have outside of that room—and questioning a medical expert is difficult even for those patients who are highly educated and privileged. Let alone for those who are not—who are further disadvantaged by their race, class, immigration status, trans identity, sexual orientation, weight, or multiple marginalized identities.

The result is that, all too often, women internalize doctors’ dismissal. Or they convince themselves that it was just one bad apple. Indeed, the sexism these experiences are rooted in is subtle enough that it’s hard to pin down when you’re seeing only one story—your own—in isolation. So women keep these experiences to themselves—and in doing so, don’t see exactly what they need to see: that it is not just them; that many other women have had very similar experiences.

These stories also need to be shared to reveal to those within medicine how widespread they really are. That’s another of the most important lessons I learned from my research: the problems that women face in the medical system have become entrenched and self-perpetuating in large part because doctors are not getting the feedback they need about their errors. A problem can’t be fixed until it is acknowledged to exist.

So I hope you’ll check out the book, and even more than that, I hope you’ll consider sharing your own stories of gender bias in the medical system—with your friends, on Facebook, with your peers within the medical profession. On Twitter, you could use the hashtag #doingharm. It’s the first step in creating the long-overdue change that we so desperately need.